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Cancer

[CANCER] Where are we at? More appointments, more treatment, more uncertainty…

The last few weeks have been hard work, to say the least … once again gone from working on a big bid, getting on with some writing (including a piece on using blogging to manage cancer, and wondering what might write about as treatment becomes more ‘routine’ – ha ha ha – I wish for routine!) to the uncertain jungle of changing diagnosis, new tumours, new treatments and fear as cancer punches me in the face again… Last time I blogged, I’d had Friday’s radiotherapy, and had a weekend to chill… and here we are back to Friday again… so it may not be my finest writing, but let’s get some updates out of my head!

Weekend

The weekend was mostly dozing (on my lovely new bed – thank you to friends who said ‘we may not be able to help much physically, but if we can help you sleep’). Face was still puffy, got stressed about my website being down, but we got it back up – and I’m playing around with new themes and wondering if I have the brain space to tidy it up 🙂

 

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Morning. Still staring at my down website – want it magic’d back up … Not so #BusyLivingWithMets

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Went for a little walk – originally just to the Post Office, but all the way to the church!

Monday

Back into the Christie for 5/5 radiotherapy – nice to be whizzed along in the wheelchair by Ben, who usually does much Macmillan work, but is largely keeping us safe/portering (no need for the gym these days – and boo – I’ve had to cancel my gym membership – I miss the pool) – different suite today, but same lovely staff – and we were fairly swiftly done. A reminder that the treatment will keep working over the next couple of weeks – possibly more discomfort/tiredness/redness (got away without that so far) so keep a bit chill (like I know how to chill)!

 

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Ready for 5/5 of emergency #radiotherapy. Oh man, I’m tired. Mum coming to help for a few days 😉

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The guy who dropped me off at the transport desk may have miscommunicated with them about where he left me – he left me with a nice view, rather in the normal dark corner next to the cash machine. I was watching a couple of ambulance guys outside waiting – I thought might have been for me – it was – well, I hadn’t moved (and I had my phone) – but after about 20 mins they found me, and got me home again 🙂

My mum has done the long drive across from Suffolk to help out for a bit … (she’s not a fan of Manchester roads, so even more appreciated) … and yes, I may have wailed and railed against the unfairness of this mess – lovely to have mum’s hugs – although of course I have my bubble family hugs too – so I’m lucky in that respect!!

Lovely to get some messages from those filming at Boughton House for Greenbelt – been prayed for today – look out for the bank holiday programme from home – only £10!

Tuesday

Mum’s job is to look after theirs kids, right (to be honest, I was thinking by this age, would start to be the other way round) … so we’re working on sleep, short walks, good food (there’s been a lot of sugar in the house recently, which is fine to an extent, but my body has been craving some nutrients), tidying the house up again … and yeah, just being the person you can be grumpy and sleepy with!

Also, we’ve sorted out for Weds 12th, a chance for a chat with Andrew Graystone (part of my bubble family) – he’s doing some lighthearted Zooms related to his new book ‘Faith, Hope and Mischief‘ – if you contact me, I’ll give you the login 🙂

Even got a chance to watch Holby live – unusual these days – and a bit cancery TBH, but at least it’s not actually my life – and I’ve some empathy with Essie!

Wednesday

It was back to the Christie for an appointment with the oncologist – they’re doing a lot of these appointments on the phone, but partly because I wanted to see my scans, have a deeper conversation, and we needed a blood test to make some decisions about next treatment….

-edit- draft had deleted – reminder that the hospital admission last week was because

1) Tumour in lymph node squashing vena cava (3 main veins, I think)

2) Blood clot in jugular vein needed treating – combined – leading to fluid build up/breathlessness -end edit-

In at 2pm for bloods – bit of a debate about whether they could cannulate because ports are more work for them, but thankfully they went with the ‘I have a port because cannulation is a stress’, and that was soon done, and it was sit and wait an hour for the results to come back…

Sent into the consultation room around 3pm, where I sat for around half-hour watching Dr C popping between other rooms, and the nurses did their checks. If the Stepping Hill and The Christie scales are anywhere near equivalent/correct, since admission to hospital around 10 days ago, my body weight has dropped around 7kg – and you can clearly see that the fluid has been disappearing from my body/face – which I am super thankful for… I still appear to be 162cm tall tho..

In my head, as there’s been so much pain across my chest, it has felt like my whole chest area has been taken over by a tumour – I don’t think that’s so – and thankful to those who are trying to explain my CT scans to me, but TBH I’m not entirely clear which is tumour (told is a mass pressing onto sternum, and maybe some cracking on the sternum – hence the opiods and other painkillers). When the biopsy was done the other week, they did it near the bottom of the rib cage where there’s a lot of pain/bruising/tiger marks – but apparently that’s not where the tumour is! Anyway – left-hand side is where I’ve had a mastectomy so yes – that’s my breast tissue at the top … darkest colour is lungs (with cancer specks in the lymph nodes?), central area is heart, whiter areas are bone, greyer areas I guess a mix of tissue, fat, tumour… (I thought the darked grey behind the sternum was tumour)… obviously when he showed me on the screen, it goes all the way down the body, and I only got one screenshot


I said to Dr C that over the past few weeks I have developed a lot of pain in the right shoulder/right arm, as pain has been disappearing from other areas, and as my breathing has been coming back to some extent. He said that the original CT scan did show a possible inflamed lymph node (cancerous?) in my right armpit so that is causing that problem (pain, and pins/needles) – peripheral neuropathy – but hopefully more treatment will deal with that too (though it might bring it’s own new side effects).

Advice from Dr C:

  • We’ve done full radiotherapy on the whole sternum area – it’s not just the lymph nodes, so we’re not doing more radiotherapy for now. Breathlessness/fluid loss should continue to improve, although irritation could continue for a couple of weeks and DON’T FORGET THAT RADIOTHERAPY IS A HARSH, TIRING treatment!
  • Wants to get chemotherapy going into the body asap, and further biopsies have confirmed that the tumour is triple negative (waaah, a move from triple positive – it means that it’s hard to treat, and typically have to try treatments, if they work, we keep going – I try not to look at the stats too much as they’re quite dismal, but only 10% lasting more 5 years is not unusual … bit different from last year’s ‘just oligomets, we’re really optimistic’ – as someone told one of the Nolan sisters last week – I’m still in shock at how-fast things have gone downhill) – so we’re onto paclitaxel (which I did have for primary treatment – I think quite survivable, but I got more and more tired every week, with mouth going to rubbish) for 18 weeks, then a scan, and we see whether anything is working.
  • I have until treatment starts 10am Monday morning (back with the lovely nurses at Stepping Hill) to decide about the cold cap, but I’ve already decided that I think I’ve given that a fair crack of the whip. Hair MIGHT not fall out, and if it does, the wigs are coming back out of the attic, and let’s rejuvenate the hats. Should this treatment work – we may just keep going on with it every week, so the thought of cold capping for 9ish weeks, maybe, forever – nope – especially as can’t have anyone with me holding hands for that first 20 mins of pain! I’ll probably be in the hospital for around 3-4 hours at least every Monday …
  • The dexamethasone steroids I’ve been on I’m able to halve this week, then halve again next week, then stop – all helps with the sleeping hopefully (although I’m still downing the Zopiclone and morphine at night for now…)…
  • I’ll have to continue on the blood thinners for 6 months – clexane self-injections – not usually one to show pics of stomach – but hey – look how my body is keeping on going under this onslaught (and got a tip from a friend for some cream to help manage the bruising):
  • My head is obviously full of prognosis, what about work (should I retire, etc.) but Dr C said it’s not really time to talk about this yet. We need to get the chemo going, be patient, and see if this works. People try and encourage with ‘oh, I’ve been on that drug for 16 months’, but at age 45, 16 months doesn’t sound long – I want to be talking years (and good years, not pain-filled years). We’ll do a scan in 3 months and if it’s working, keep going, and hopefully be finding ways to manage the side-effects and see what it’s doing to pain, concentration, etc. etc. If ever there was anything to make you focus on trying to make the most of NOW …
  • We popped across to Maggies afterwards (obviously my mum wasn’t allowed into Christie), where I wept upon Lisa again, and said big fears are clearly 1) treatment not working 2) finances 3) quality of life 4) loss of independence … but that’s partly what they are there for … so arranged a phone call to come from finance team. Maggies have already helped me get PIP thankfully, which has made a huge difference ..

Thursday

All I have wanted for a few days is some sea air – not seen any since left Long Bay in New Zealand … so we drove across to Talacre (which we thought would be a bit less busy than Formby/Crosby, and if we went Thursday – less than the promised sunny weekend!)… and oh yes:

Enjoyed a paddle, a breeze, reading a bit of fiction (and oh, I wanted a dip, but thought that was maybe pushing it going from 2000 steps to swimming!), an ice cream, and some dopey dozing on way back… was super tired on return, but still half-awake all night (pft).

Still super-grateful to come back to my new bed (thanks to those who helped buy that), and appreciating my regular waves with the postman and the Amazon delivery with remembrances from friends – really does lift the spirits! My mum if working on getting the house clean (cleaner we hope can restart next week anyway, using PPE – get that mental/physical health balance, managed risk), emptying out food I shouldn’t be eating (see p18/19), making a few bits and pieces – freezer is currently rammed, but appreciated offers of forthcoming food, have had some from byruby and Cook (and some more vouchers for Cook). I’ve been doing quite well with getting deliveries, and I know people will do collections/drop-offs of food for me (it’s challenging getting the right £ minimum order/fresh food, etc.) … annoyingly I can’t now have the delicious yoghurt that my milk delivers (can’t have live yoghurt) so will be sending people for greek yoghurt with honey pls, or Aldi’s Salted Caramel!

Trying to be less proud, I’ve put a few ideas on wishlist – who knows there may be crowdsourcing for mortgages/treatment to come, but for now trying to Keep Calm, Carry On, be sensible, not be too bitter about the bashing my income is likely to take, even if I manage to keep working/well … it’s too early to make all those kind of decisions…. and of course lots of people are going to be affected by COVID too (thankfully I have years of living on student budgets). I have been asked if I’d rent out my spare room – but really – last thing want at present – and if COVID could get in the sea, I want friends back to visit (and will still be looking for ways to safely do socially distanced walks, chats from the end of the garden, visitors who’ve done risk-management isolation, suggest times for more online chats, etc.) – and be prepared for me to be tired and flakey with arrangements… oh and I’m rubbish with stuff in my garden so I am never going to complain at people sorting that out (I joke about having a garden makeover team in, it’s not that much of a joke sometimes)! I have dared to order a gooseberry bush, and hoping to see cherry fruit next year, right?

In two minds about charitable stuff – have suspended MOST for now so if people looking for new charities to support… part of me wants to continue paying it forward, but also being sensible right now …. and not forgetting that metastatic cancer research is very underfunded already

Friday

I had counselling this morning – more tears – and a lot of encouragement to realise just how tough the last couple of weeks have been – with serious threats to health, changes in diagnosis, hospitalisation, steroids, radiotherapy – all in the unfriendly environment of COVID … we’ve done a lot of ‘work’ on trying to be more present (my default is to try and get organised, plan ahead, and things just keep knocking me off my feet too fast!) … one of the conversations had been about ‘blackberries’ and that being the only thing to do one day (it’s v weird at the moment – can take all day to manage a 5 minute job that used to do before work) … so me & my mum headed of to pick some more blackberries (so now a couple of crumbles squeezed into the already overstretched freezer) round Reddish Vale – got LOADS more than we expected – though had to stop and try and deal with the arm pain (stretch, wave, pull – nothing really seems to win!)..

Came home to a call from one of the lovely financial people from Maggies, where we talked about where I’m at at present (I think I went off sick 1st July, but I’ve 6 months full – never used my full allowance so far, but I guess that’s what it’s there for)… and what might be there should I disappear off the payroll – I’m sure I’ll never be short of things to do (and I still want to get my book/papers done, and I’ve a couple of funding bids still in process). I know I need to chase up details of where I’m at with pension (unfortunately with academia I would have started late/low pay, but apparently if need to take ill-health retirement could be better than expected)…. all just requires headspace. And today: counselling, clean house, blackberries and blog (cos my life is so interesting – anyway – helps me untangle my brain, and people say it helps).

And we’ve just had a beautiful pizza (I had to ask my freezer for yet a little more space as not finished that either) al fresco (it’s quite warm, isn’t it):

Thinking about life & death

This last week or so has brought death swinging back around a lot into my head – but encouraged by reading books by Jennie Hogan and Fi Munro (who has just died 5 years after an ovarian cancer diagnosis) to use that focus on death to focus on life (as ever) – and of course Dr Kathryn Mannix. I’d done my will, some funeral planning (though would like to sort out my plot – that’s confusing), and my power of attorney is just waiting official certificates in the post. I really want to encourage people to think about this NOW, rather than waiting until death is poking around the corner – if COVID has taught us nothing – it can appear swiftly … and I’ve friends trying to live with cancer, who’ve ended up dying in an accident, so…. Kathryn Mannix talks about the distress of being in a room with families who have not dared to talk about it ‘because it seems to make it real’ … but honestly – 2 certainties in life, right – death and taxes!

I’m not ready to go yet, but I LOVE this picture…  and mostly I just want to SEE people (though getting back to New Zealand, see my Winchester/Portugal/Jersey families, and Prince Edward Island would be ace – along with these other ideas (inc NW) that I keep popping on)… so let’s pray for COVID miracles…. and for cancer charities to be able to get back to undertaking research because we’re losing out on new treatments!

*If there’s some extra odd bits in this blog post, somehow or other managed to do a combo of save/overwrite and have had to go back through previous versions to try and find what I’d written.

Categories
Cancer

[CANCER] Stereotactic Radiotherapy Completed #BreastCancer

So, we have finished the first of the new treatments… there was an ‘end of treatment bell’ outside the room. I thought about it, because I think we can celebrate every little chunk of treatment (though I know a lot of stage 4 patients find them very difficult to cope with)….

One of the silver linings to a lot of hard work (and yes, several people have said that cancer is pretty much a full time job – right now, they’re not wrong) is the opportunity to spend time with people in the waiting room – and that #waitingroomfeet (with lunch beforehand for these treatments):

This treatment was thankfully pretty straightforward also – took a bit longer than last time, but after about 55 minutes (I’d asked Claire to count) we were done (even had time for a chat with the lovely staff – to whom I had, of course given cake):

 

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Goodbye radiotherapy #whatcancerlookslike

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Back into bed with ‘How to get away with murder’ – and then yesterday a gentle walk (the week has been one of nausea and fatigue – and hiccups, though in many ways not as bad as thought at the beginning of the week, and pain the back has been manageable):

 

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Very very gentle wander and sit … #busylivingwithmets

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And now my cousin Alison, and her son Thomas have just arrived from Portugal. Nausea still not quite gone, but better than I thought I’d feel!

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Cancer

[CANCER] 2/3 Stereotactic Radiotherapy Done #BreastCancer

So, yesterday was the second of three stereotactic radiotherapy treatments on my spinal tumour – with the hope that it blasts it to pieces, before chemotherapy mops up the pieces.

Stereotactic:

involving, being, utilizing, or used in a surgical technique for precisely directing the tip of a delicate instrument (such as a needle) or beam of radiation in three planes using coordinates provided by medical imaging in order to reach a specific locus in the body Merriam-Webster

Lots of things have been explained to me whilst preparing for the treatment – but the upshot of it is that it’s very precise and I need to lie SUPER-STILL so they can target the small area VERY PRECISELY.

I therefore have to wear this mask, which was shaped whilst I underwent a CT scan, then had to wear it for an MRI scan, for 2+ hours last Friday, another 45+ minutes on Monday … so I asked them to take a photo..

… and no, it’s not very comfortable – though the team make it as good as they can with bits of gauze, etc. – because they need me to hold that position for a long time:

If I had a brain tumour then more of my face would be covered, but as the point of the mask is to hold me still, and not to target a brain tumour, then quite a bit was pulled back to leave my nose/mouth free (not that I can move my bottom jaw, so I can’t speak). I can see a bit through the holes over my eyes – watching the machine rotate around me.

Yesterday’s appointment was over in around 35 minutes from heading in, to heading out, according to Andrew who gave me a lift! I’m struggling a lot with nausea and a bit of a whooshy head, plus I need to keep very calm, so having someone with me beforehand helps with that… here’s hoping this is all short term, and gives me some more years without needing radiotherapy again (preferably more than less than a year I had since last time)…


One more to go tomorrow! Then more chemotherapy starts 15th April (4 cycles of docetaxol + other drugs over 12 weeks + ongoing drugs every 3 weeks after that)… before looking at an oompherectomy.

Categories
Cancer

[CANCER] Success with Round 1 of Stereotactic Radiotherapy #BreastCancer

As the radiotherapist said as I was leaving – that smile’s not going to leave your face today is it:

 

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We are one #radiotherapy treatment down! Back on Weds and Friday for the other two … #whatcancerlookslike

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Because, YES, after Friday’s disappointment, we completed both Day 0 and treatment 1 today! I’m not entirely sure what time I went in, maybe 3.40pm, and I was out by 4pm!

I had taken paracetamol, ibuprofen and codeine before I went in, drunk/eaten plenty, slept well with a sleeping tablet, and we had a small plaster under the pain point on my head (which still seemed to ram my head more tightly into the mask). The music was set playing – something gentlish but recognisable (particularly enjoyed Caro Emerald at one point), and I couldn’t really see anything, but could hear the machine moving. Then I was SURE something new had happened – which sounded like treatment for about 30 seconds … then there was a big gap, and someone came in to ask me to hold on a little longer as half the treatment had been done, and they were just lining up for the second go (it’s SO hard to stay still on that rigid board) … then I heard the same noise (laser type noise?), and then a couple of minutes later, the team came to take the mask off (it is really tight to the head – as is needed) and we celebrated that this was done – before heading home (nice to be a passenger and watch the Manchester skyline)!

So, this appears to be the secret – meet a friend who is able to drive – for lunch – chat about all kinds of things, get taken to the hospital, and keep myself occupied whilst in the waiting room with our #waitingroomfeet (so who’s up for Wednesday/Friday this week?):

 

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It’s more #waitingroomfeet with Julie this time. Come on #radiotherapy – fall into place!! #whatcancerlookslike

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Thanks to Shelley and Julie for getting me through those first two appointments – the future ones they say should be even swifter as they now know that they’ve got it! Meantime, I’m home, just firing up Fyre on Netflix, with some soup. I feel quite spaced out, overtired, a bit nauseous, and my back is definitely feeling like it’s had a gentle pummel. Definitely need a gentle week this week then! Thanks to you all for prayers and ‘good vibes’ – we got our ‘Magic Monday’!

Categories
Cancer

[CANCER} More uncertainty as we attempt stereotactic radiotherapy #BreastCancer

As I talked about on Radio 4 the other day, cancer is full of uncertainties. I headed into counselling this morning with my head bouncing around all over the place, nervous about the potential 20% chance of spinal fracture from stereotactic radiotherapy.

Post-counselling, I met with my friend Shelley, and we went for lunch at Puss in Boots, before heading to the Christie at Salford Royal (apparently out of 17 radiotherapy machines in the Trust, this is the only machine that does stereotactic). We settled into the chairs:

Around 3.45pm I was called in, and the process was explained to me – that today is ‘Day 0’ of treatment, so it’s all about collecting images, and setting up … if we’re lucky I would get treated today (obviously I hoped this is what would happen) – but because we’re working with my spine, there’s extra caution in this… it HAS to be correct.

As you can see, it’s not massively comfortable, a rigid board, and a small foam cushion (not particularly squidgy) for the neck, a cushion to hold my knees up, and the mask over my face, but despite residual anxiety, I wasn’t particularly worried about the process.

I lay down, the staff continued explaining what was happening, I was given a choice of music – we decided I might dance too much at pop tunes, so went for classical… and then they came in/out for an hour making small adjustments, by which time the pressure on the right hand side of my neck was intolerable .. I had been told to raise my hands if it got too much, but I so want this done, I kept thinking, just a few minutes more! After the hour, both radiographers and oncologist came back in – and said they wanted to give me a break – the relief of taking that mask off was great – as was sitting up from the cushion!

I headed out to the waiting area where Shelley had paracetamol (must remember to take more painkillers before the event on Monday) and tissues, the desk staff found me a hot chocolate, and shared some of their chocolates with me (I feel very well looked after here).

I then headed back in for another hour, by which time the pain had built up again – and it was nearly 7pm, so they let me out, and said although they’d got within 0.6 degrees they weren’t quite there yet. The first round post break was better than the second, so we hope that Monday we finally get there. Dr Calaco said that in the States where he’s done this, people can be in set up for 3-4 hours, that it was not down to me, and they have got LOADS of information from the imaging they’ve already done, so come back Monday and try again. Bit anxious because if it doesn’t work Monday, there’s a question of whether the stereotactic radiotherapy gets abandoned… and we consider standard radiotherapy (whereas one dose of this is is worth a whole round of standard radiotherapy – and I want that tumour zapped!) … talk about uncertainties …

So this weekend need to chill out (anyone fancy a walk), sleep well, and head back in on Monday (anyone have a relaxed Monday afternoon free, and want to accompany me <edit> this is now sorted) and pray it works! Meantime, we thankfully were late enough to miss the traffic, and home for port, a Magnum, and continuing to rewatch Line of Duty… onto series 3 now! Man, #CancerSucks